2020 Rare Disease Week Legislative Conference Materials
Information on Legislation:
Rare Disease Week on Capitol Hill Program Booklet
One-pager on Creation of the Rare Disease Center of Excellence at FDA
Sign on letter for the Rare Disease Center of Excellence
One-pager on Newborn Screening Saves Lives Reauthorization Act
One-pager on Rare Disease Congressional Caucus
One-pager on Medical Nutrition Equity Act
Logistical Information:
Schedule of Events with dates, locations, and metro stops
Instructions on How to Download Voter Voice App
Additional Resources:
State Specific Congressional Scorecards (printable)
Information on Fast Forward for Rare Video Suite at Legislative Conference
Informational Webinar on Rare Disease Week on Capitol Hill 2020–December 12, 2019
Rare Disease Week Deep Dive Policy Webinar–February 13, 2020
Rare Disease Week First Time Attendees Orientation Webinar–February 20, 2020
